Clinical Care Centers -

Providing Coordinated Care

We have partnered with 23 medical centers in the United States and another 13 throughout the world to form a network of Clinical Care Centers (CCC’s) for VHL.  Each center provides us with a single point-of-contact, so that people seeking care for VHL have a name and a telephone number to call.  Each CCC has committed to work with people with VHL, to help them wend their way through the forest of medical specialists needed to manage VHL.

The list is still growing. To view the current list of centers: click here

In this issue we meet two of the centers.
From Maegan Roberts, MS:

 “The Mayo Clinic Florida (MCF) is excited to be recognized by the Von Hippel-Lindau Family Alliance as a VHL Clinical Care Center.  MCF fills a geographic need for VHL patients being the only CCC located in Northern Florida or Georgia.  The Mayo model of care aims to decrease the time and resources patients need to invest in a visit.  Scheduling is efficient, with several consultations and tests grouped into the shortest time possible, usually 2 to 4 days.

“It is vital for VHL patients to be seen by medical providers who have knowledge of VHL.  At MCF, our VHL patients are seen by a multi-disciplinary team.  This team is directed by a Medical Geneticist, Dr. Douglas Riegert-Johnson, and a board certified genetic counselor.  There are many other physicians in a wide variety of specialties which complete the Mayo Clinic VHL CCC.”

From Gayun Chan-Smutko, M.S.:
“The VHL CCC at the Massachusetts General Hospital (MGH) is staffed by Dr. Othon Iliopoulos, genetic counselor Gayun Chan-Smutko, and a patient coordinator.  Together we provide comprehensive care and coordination of care for patients with VHL disease and other hereditary kidney cancer syndromes.  In the past year, we have seen a continued growth in new referrals to the MGH CCC from the New England area.  In particular, there has been an increase in referrals from internal and external providers with patients who have a single hemangioblastoma, no other symptoms or findings, and no known family history of VHL-related lesions.  This has helped us continue to broaden our understanding of VHL disease from the clinical standpoint.”

As printed in the VHL Family Forum 17:4, Annual Report 2009. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.